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The 100-year Life: End of Life, Death and Bereavement

The 100-year Life: End of Life, Death and Bereavement

An enquiry building on previous work funded by Marie Curie exploring the role of design in rethinking how we experience end of life, death and bereavement.

Funded by: Research England

Project lead: Helen Fisher, Claire Craig

The UK is undergoing a huge demographic shift. On average people are now living much longer and this trend is set to continue: by 2037 the number of people aged 65 and over will rise from 11.6 million today to 17.8 million. While this is a triumph of modern medicine and living standards, it will actually translate into more, increasingly frail, older people, with multiple health issues, who will need more care towards the end of their lives. More people will need personalised and tailored care in the future and most of this care will take place in the community, in people’s own homes and care homes, rather than in hospitals. Within the context of the 100 year life, a consideration of the role of design at end of life is important. Death is a key part of life and of the 100 year life.

This enquiry builds on the 2 year Marie Curie funded research project Design to Care. Claire Craig is working with the Michele Angelo Petrone to explore ways of supporting individuals diagnosed with life-limiting and terminal illness. Helen Fisher is working with the FLOW Academy (led by Sheffield Teaching Hospitals with representation from key organisations across the city including the Carers Centre, Age UK, Sheffield Alliance, MIND and other 3rd sector orgnisations) to explore the potential of design-led interventions in the context of carers and family members.

Future Care Home

This enquiry explores the role of design in reimagining the future care home. It focuses particularly on the role of design in the creation of research informed products to promote meaningful engagement between residents in the home, their families and care staff.  

Funded by: Research England

Project lead: Claire Craig, Helen Fisher, Tom Maisey

Partners: Kathryn Rawling, Sheff Care

Older people living in care homes have some of the most complex needs of society (BGS 2016). Whilst there is a high level of consensus that participation in meaningful activity leads to increased quality of life for older people (Han et al 2016, Wenborn et al. 2013) repeated studies have highlighted the limited opportunities older people living in care homes currently face when accessing this provision. Mozely’s study, for instance, identified in her study of 100 homes that 80% of the homes provided less than 6 minutes of activity per resident per day. A similar picture was presented in Hancock’s research (2006).

In response to this unmet need design researchers in Lab4Living have been investigating the development of ludic artfacts to support the wellbeing of older people (Craig, 2014, Craig, Chamberlain and Fisher, 2018; Fisher, Craig and Chamberlain, 2019 and Maisey and Craig 2016). To date, residents from over 10 care homes in Sheffield have participated in the study and a number of research informed products have been created. These are currently being evaluated.

The research raises questions about meaning and value in the context of the care home and the potential to re-imagine this space and the interactions that occur there.

Being part of this project has been an extraordinary and wonderful experience, you are transforming the lives of individuals I work alongside 

Sheff Care Member of Staff

Trails – Enabling Ongoingness

A design artefact that explores concepts of ongoingness in the context of dementia. The piece explores the relationship between a granddaughter and her grandparents through capturing and curating digital media now for the future, offering ways for her to feel a sense of her grandparents in particular places.  

Project lead: Helen Fisher

Funded by: Research England

Partners: Northumbria University (Lead) / Newcastle University / BBC / Marie Curie / CRUSE Bereavement / National Council for Palliative Care

Trails is a tiny audio artefact that invites the listener to discover stories captured and curated by loved ones with dementia when visiting places that are meaningful for the person and their family. The artefact is one design response generated as part of the EPSRC project, Enabling Ongoingness which explores the role of design in creating meaningful connections with people who have passed away or who are at end of life.

For more information please visit the Enabling Ongoingness Website.

The Memory Box – Children’s Book

Dementia can impact on all family members, particularly children or grandchildren. However there is a dearth of material to help children understand what is happening… 

Funded by: Research England

Project lead: Claire Craig, Helen Fisher

The Memory Box is one of a series of books aimed at children to build understanding of what dementia is and how to best support a relative living with the condition. The research examines whether this medium can help children to navigate the complex challenges that having a parent or grandparent with dementia can bring.

Making Sense Together

A space where people with dementia, family members and supporters can come together and explore ways of living well with dementia.  

Project lead: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Scottish Dementia Working Group / Alzheimer Scotland / DEEP Network

Traditionally patient information for people living with dementia is written separately from that aimed at their family members and carers. This research enquiry challenges this genre and through a participatory design research process has developed a resource to enable people with dementia and their family members to make sense of the condition and develop supportive strategies together.

This resource has transformed how we relate to each other. We have completely re-designed our routine, the environment and this has made all the difference in adapting to and managing the challenge that dementia brings.

Support of Person with Dementia

Photography in care homes

Project team: Claire Craig

Funded by: Royal College of Occupational Therapists, Higher Education Academy

Globally the population is ageing and the fastest growing demographic are individuals who are aged eighty-five and over (WHO, 2011). Whilst these individuals represent a significant proportion of the older people who currently live in care homes the voices of frail older people are missing from much of the care home literature. In part this is because their complex needs make it difficult for researchers using traditional qualitative methods to elicit their experiences.  

This enquiry sought to redress this balance by exploring the potential of photography as a method in care home research. This is important because if designers are to create environments that support the physical and emotional needs of individuals it is important to understand the life world of older people living in these environments.

This study was undertaken across three care home sites in the North of England. Strand one of the research utilised ethnography to build understanding of the broader cultural and organizational factors associated with photography in the care homes studied. In strand two older people were invited to take photographs of their day-to-day experiences of living in the home. The themes were analysed using an interpretative phenomenological method. The themes identified through this analysis were then embodied in a series of photographs and these formed the basis of a further interview with participants.  

The method was found to have a number of strengths: older people expressed their enjoyment of taking photographs and of sharing and talking about these, the concrete nature of the photographs helped to prompt memory recall and offered a tangible reminder of themes or issues participants wished to discuss. Through this method older people participating in the study described the multiple transitions they faced and the challenges of simultaneously navigating this new environment whilst also making sense of the ‘alien’ body they now inhabited. The life world of the older person was conceptualized as betwixt and between place and space, being in time and out of time, between hope and despair.  

A number of key findings relating to how the design of these environments contributes to quality of life were made. This work has informed a national resource for older people living in care homes. 

Me & You

This enquiry explores the role of design in supporting meaningful conversations for older people living in care homes. 

Project team: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Sheffcare

The Department of Health defines a care home as an establishment that, ‘provides accommodation, together with nursing or personal care for [individuals who] are or have been ill, persons who have or who have had a mental disorder, persons who are disabled or infirm’ (Department of Health, 2000, p.3).
 
Older people living in care homes have some of the most complex needs of society (Office of Fair Trading, 2005). Levels of dependency are high. In one national survey undertaken by BUPA and the Centre for the Policy of Ageing (Lievesley, Crosby and Bowman, 2011) 90% of care home residents were identified as having high support needs.

This enquiry explored the role of design in supporting meaningful conversations for older people living in care homes. The outbreak of COVID-19 meant that care homes became closed communities. As a consequence, residents who were frail or facing end of life were unable to tell family members how they felt and to say goodbye. This enforced separation also made it difficult for family members.  

An earlier enquiry, funded by Marie Curie, identified topics that individuals at end of life identified as being meaningful and questions people wished they had asked their relative whilst they were still alive. These topics and questions were translated into the research-informed product: You & Me.  

Current research is evaluating the potential of Me &You to support relationships between older people living in care homes and their family members, offering individuals the opportunity to express what is important. 

This little resource prompts you to record all the things you want to say to your loved one but somehow just never have time to put into words. 

Me & You Participant

Place and Space

The move into a care home has been conceptualised as one of the most difficult transitions in later life. At times this transition can be unplanned, occurring as a consequence of a life-event or crisis and individuals may as a result find themselves suddenly placed in an alien environment in an unfamiliar parts of a city. This can lead to feelings of disconnection and dis-orientation. 

Project team: Claire Craig, Helen Fisher

Funded by: Art and Design Research Centre, Sheffield Hallam University

Partners: Sheffcare

The research enquiry ‘photography in care homes’ (Craig 2014) highlighted the importance of finding ways to support residents to gain a sense of place and space and thereby experience a sense of belonging. This was found to be fundamental to wellbeing. 

The present enquiry responded to the findings of this study and was undertaken in care homes in the North of England. Lab4Living design researcher Helen Fisher worked with residents and staff to develop a series of 3-dimensional interactive maps. Through an iterative ‘research through design’ process, a range of tools for orientation and meaning-making were created. These are currently being trialed across a number of care homes.  

Findings to date suggest that the maps act as mechanisms though which individuals are able to communicate important facets of their life and through this process staff in the homes are able to build significant relationships.  

The resources continue to create a focus for meaningful conversations and a way to discover who people are. 

Activity Co-ordinator

Connecting People, Connecting Support Online

Connecting People, Connecting Support is an online space where people with dementia, family members and care staff can access post-diagnostic materials informed by our research programme Journeying through Dementia.  

Project team: Claire Craig, Helen Fisher

Funded by: Research England

Partners: Alzheimer Scotland, Royal College of Occupational Therapists,
Scottish Dementia Working Group

The web-platform was created in response to the COVID-19 pandemic in 2020, which saw many individuals confined to home and unable to access vital services. The website was highly successful in providing a platform through which individuals and their families could access the Journeying through Dementia research and it was found to be a positive way to engage with a wide-number of individuals. Within two months of its launch the materials had been viewed over 30,000 times, and formed the basis of interventions used by the Alzheimer Scotland link workers. The research team was invited to offer a webinar to over 150 Allied Health Professionals about the work and it was cited in the Guardian as an example of best practice in relation to University responses to the COVID-19 pandemic. 

‘An inspired uplifting place to visit, brimming with a wealth of ideas and information.’ … ‘The site can be used as a tool to improve the knowledge of people who are new to working with dementia as it gives a lot of information and a sense of positivity to cascade to others.’

Kathryn Rawling – Sheffcare

Our clinical support worker has been using the website to focus welfare phone calls for people living alone at home with dementia. They’ve gained quite a rapport from using the topics as themes for their conversations – great work! 

Allied Health Professional

The Scottish Dementia Working Group undertook an evaluation of the materials and feedback was overwhelmingly positive.  
 
The work had formed the starting point of a broader enquiry, which seeks to build understanding of the design qualities and features that can help people with dementia to meaningfully engage with this technology. The next phase of the work will be to test a series of principles and practices that have been developed in the delivery of a group-work intervention on-line. 

I am amazed at what you have achieved in such a small amount of time. 

Allied Health Professional

Carers don’t have the energy to search for things online so having this all in one place is great… People feel like they’ve won the lottery when they see the website!

Allied Health Professional
10,000 Visits and 60,000 Page Views

In the first year of the website being live (March 2020 – March 2021) it had over 10,000 visits and almost 60,000 page views.

News and citations

Coffee Table Conversations

This research explored the role of design in re-imagining patient information. During a previous enquiry, Journeying through Dementia, individuals living with the condition described how existing hospital information and leaflets reinforced a reductionist and medicalized view of the self. The research identified a need to create materials that were more personalized and could challenge the stereotypical images commonly associated with living with a diagnosis. 

Project team: Claire Craig, Helen Fisher

Funded by: National Education Scotland

Partners: Alzheimer Scotland

The team employed a participatory research approach, working with people with dementia and health care staff in Northern England and Scotland. The themes of the cards were determined through the research process and reflect the topics identified as being important. Decisions in relation to the images were made in partnership with people living with dementia.  

The resultant materials provide key information that can be shared with families but the design and style of these mean that they can sit comfortably on the coffee table, blending seamlessly with the home environment.  

These have found to be effective as a focus for conversation and as a mechanism to support engagement in meaningful activity. 

It makes such a difference having something blether about. The cards are beautiful. They aren’t hidden away but sit proudly on the coffee table. 

Participant